There are a bunch of new clinical trials for lupus.
Some are for drugs, some for stem cell transplants.
Go here
http://www.clinicalconnection.com/SearchStudies.aspx
where it says "keywords" type in "lupus"
then click the "search" button
There are currently 4 studies shown in their database, but look below that and click the red link that says "Show results from other databases" and a whole bunch more will pop up, including all the stem cell studies.
Showing posts with label lupus nephritis. Show all posts
Showing posts with label lupus nephritis. Show all posts
Monday, October 18, 2010
Monday, September 1, 2008
Hands offa my kidneys!
The evil kidney biopsy is on my list of 15 least medical procedures, along with catheter and root canal. the thing about kidney biopsy is that while your doc may tell you it is necessary, many other docs will tell you it is not. and according to whatever book it was i was reading the first time i was *told* I *needed* a biopsy, these biopsies are a matter of debate among docs as to whether they are necessary and whether they even provide any useful information.
As far as I can tell, there's no real upside to getting a biopsy.
However, there are definite downsides. There are major arteries in the kidneys. if they happen to hit one while rooting around trying to snip a few pieces of tissue off your kidney, you can have a dangerous amount of internal bleeding. if you are a bleeder, like me, you may spend all day in the hospital receiving anti-coagulants until it's safe enough for them to do the test (my 2nd biopsy). or they may choose to instead play it safe and do an open biopsy (cut you open) so they can see what they're doing better. if this is the case, you will be put under general (complete) anesthesia, intubated, both of which are not without risk, in a hospital, which is teeming with germs. then you may (as i did) get infected and have green puss oozing out your side. in my case I'm allergic to so many antibiotics i decided to kill it off myself by taking 60 garlic pills a day. in the summer. with no air conditioning. (on the other hand, i was completely safe from vampire attacks). (my first biopsy).
both times i was told it might be a class 4, whatever that means, and both time i was told there was "not enough tissue."
i really suspect this test at best is a useless exercise, and at worst an invasive and unnecessary way to make money off the backs of and at significant risk to patients.
There will not be a 3rd biopsy on my kidneys.
they can get the info i need from urinalysis and blood draws.
As far as I can tell, there's no real upside to getting a biopsy.
However, there are definite downsides. There are major arteries in the kidneys. if they happen to hit one while rooting around trying to snip a few pieces of tissue off your kidney, you can have a dangerous amount of internal bleeding. if you are a bleeder, like me, you may spend all day in the hospital receiving anti-coagulants until it's safe enough for them to do the test (my 2nd biopsy). or they may choose to instead play it safe and do an open biopsy (cut you open) so they can see what they're doing better. if this is the case, you will be put under general (complete) anesthesia, intubated, both of which are not without risk, in a hospital, which is teeming with germs. then you may (as i did) get infected and have green puss oozing out your side. in my case I'm allergic to so many antibiotics i decided to kill it off myself by taking 60 garlic pills a day. in the summer. with no air conditioning. (on the other hand, i was completely safe from vampire attacks). (my first biopsy).
both times i was told it might be a class 4, whatever that means, and both time i was told there was "not enough tissue."
i really suspect this test at best is a useless exercise, and at worst an invasive and unnecessary way to make money off the backs of and at significant risk to patients.
There will not be a 3rd biopsy on my kidneys.
they can get the info i need from urinalysis and blood draws.
Wednesday, June 18, 2008
Attack of the Killer Kidneys
I've had kidney involvement with lupus since 1992. Or as the docs say, Lupus Nephritis. What it means is the lupus (immune system gone awry) is attacking the kidneys. Not so long ago, say 40-50 years ago, this was a death sentence.
But nowadays, this attack can be halted, and even reversed, with drugs. I've had my kidney function go down to somewhere around 25-30%, told it would never improve, and to be expecting a transplant/ dialysis within 5 years (that was 6 years ago).
In fact, my function has gone this low 3 times (with each lupus flare), and has always returned to normal after getting the lupus under control. The first time we used just prednisone. I also got chelation therapy from an alternative practitioner and went natural with my diet, avoiding gluten and making my own juices. I was on prednisone for about a year, starting at a high dose.
The second time I got sick (lupus flare as they say), I had prednisone, 4 blood pressure meds, chemotherapy (cytoxan) and some other drugs that were for other problems (no fun drugs like marijuana though- gotta move to California!), as well as chelation therapy, diet change (candida diet), herbs, and lots of acupuncture. Again on prednisone for about a year, the other drugs for 1-2 years.
the 3rd time, i refused the cytoxan because it made me so sick, and it has been controlled this time with prednisone (for about a year), cellcept (on this indefinitely- about 18 months so far. it can be very expensive, by the way, depending on your insurance), another blood pressure med, a few other unrelated drugs and acupuncture and diet change (low sugar, low salt, eliminate nutrasweet, avoid gluten). I always go back to my crappy diet. Will i ever learn?
I've had this disease since 1992, and I haven't had to go on diaysis or get a transplant yet.
I do know someone who had lupus, got a kidney transplant, is on some drugs to keep her from rejecting the organ, and hasn't had a recurrence of the lupus for over a decade! so, a transplant is not the worst thing that can happen to you. it was a new lease on life for her. meanwhile, I'm doing OK. I don't have the verve I did when i was completely healthy, but i've found a balance between doing stuff and resting, and hopefully will avoid a 4th "episode" as long as possible- maybe forever? It's possible (must not eat crap. must not eat crap.)
A note on the transplants, and this is really messed up. If you use medical marijuana, you may be refused for an organ transplant, even though the marijuana was prescribed by an M.D. The federal law trumps the state laws in this area. So, if you're in pain and also a candidate for an organ transplant, you're better off using Percocet (even though is causes constipation and is cut with Tylenol, which is toxic to your liver). SO, pop all the pills you want just don't smoke and plants.
So, anyway, if you've got lupus, and lupus nephritis, you'll be OK if you can get your hands on some prednisone (which believe me, they're happy to hand out. My cat and I were on prednisone at the same time once. His was cherry flavored. mine tasted like rat poison. or what i imagine rat poison would taste like). Prednisone sucks, but it works, and it's cheap, and you'll live to tell the tale.
But nowadays, this attack can be halted, and even reversed, with drugs. I've had my kidney function go down to somewhere around 25-30%, told it would never improve, and to be expecting a transplant/ dialysis within 5 years (that was 6 years ago).
In fact, my function has gone this low 3 times (with each lupus flare), and has always returned to normal after getting the lupus under control. The first time we used just prednisone. I also got chelation therapy from an alternative practitioner and went natural with my diet, avoiding gluten and making my own juices. I was on prednisone for about a year, starting at a high dose.
The second time I got sick (lupus flare as they say), I had prednisone, 4 blood pressure meds, chemotherapy (cytoxan) and some other drugs that were for other problems (no fun drugs like marijuana though- gotta move to California!), as well as chelation therapy, diet change (candida diet), herbs, and lots of acupuncture. Again on prednisone for about a year, the other drugs for 1-2 years.
the 3rd time, i refused the cytoxan because it made me so sick, and it has been controlled this time with prednisone (for about a year), cellcept (on this indefinitely- about 18 months so far. it can be very expensive, by the way, depending on your insurance), another blood pressure med, a few other unrelated drugs and acupuncture and diet change (low sugar, low salt, eliminate nutrasweet, avoid gluten). I always go back to my crappy diet. Will i ever learn?
I've had this disease since 1992, and I haven't had to go on diaysis or get a transplant yet.
I do know someone who had lupus, got a kidney transplant, is on some drugs to keep her from rejecting the organ, and hasn't had a recurrence of the lupus for over a decade! so, a transplant is not the worst thing that can happen to you. it was a new lease on life for her. meanwhile, I'm doing OK. I don't have the verve I did when i was completely healthy, but i've found a balance between doing stuff and resting, and hopefully will avoid a 4th "episode" as long as possible- maybe forever? It's possible (must not eat crap. must not eat crap.)
A note on the transplants, and this is really messed up. If you use medical marijuana, you may be refused for an organ transplant, even though the marijuana was prescribed by an M.D. The federal law trumps the state laws in this area. So, if you're in pain and also a candidate for an organ transplant, you're better off using Percocet (even though is causes constipation and is cut with Tylenol, which is toxic to your liver). SO, pop all the pills you want just don't smoke and plants.
So, anyway, if you've got lupus, and lupus nephritis, you'll be OK if you can get your hands on some prednisone (which believe me, they're happy to hand out. My cat and I were on prednisone at the same time once. His was cherry flavored. mine tasted like rat poison. or what i imagine rat poison would taste like). Prednisone sucks, but it works, and it's cheap, and you'll live to tell the tale.
Tuesday, April 15, 2008
Are they trying to get rid of us? Dangers of Cellcept
holy crap. I’ve been on cellcept for lupus since fall 06. I’m on a lupus chat group and now it seems like they’re giving *everyone* with lupus cellcept, even those with no major organ involvement, which I think is irresponsible. first of all, much as I hate the crap, prednisone works much faster and has a longer track record. Second of all, again, I do not like the drug but it works, Prednisone is like $4 a month and cellcept is $800. EIGHT HUNDRED. I know, because even though I had prescription coverage last year, i still paid $5000 out of pocket for drugs. About 95% of that was for cellcept.
I can only say the drug reps must be doing a helluva a job schmoozing up the doctors and convincing them to prescribe this expensive, unproven drug to every lupus patient (and there are millions of us, so what a racket!) Someone’s getting a new Beemer and a vacation in Rio. And someone else is getting an early grave (PML).
>>>>
FDA issues a Communication About an Ongoing Safety Review of CellCept and Myfortic
ROCKVILLE, Md., April 10, 2008–FDA is investigating a potential association between the use of CellCept (mycophenolate mofetil) and Myfortic (mycophenolic acid), medicines used to prevent organ rejection, and the development of progressive multifocal leukoencephalopathy (PML), a life-threatening disease.
PML is a rare disorder that affects the central nervous system. When it occurs, it is usually in patients with immune systems suppressed by disease or medicines. It happens when the polyomavirus, also known as the JC virus, is activated. The JC virus is found in most adults but does not usually cause symptoms. Scientists do not know exactly how the JC virus is activated. Once activated, the JC virus attacks the cells that make myelin, the protective coating around nerve cells. Signs and symptoms of PML can include localized neurologic signs and symptoms including vision changes, loss of coordination, clumsiness, memory loss, difficulty speaking or understanding what others say, and weakness in the legs. Many patients who develop PML die. Patients who survive may have permanent disability due to irreversible nerve damage. More information on PML can be found at the National Institutes of Health website.
CellCept is approved to prevent heart, liver, and kidney transplant rejection and Myfortic is approved to prevent kidney transplant rejection. Mycophenolate mofetil, the drug ingredient in CellCept, is metabolized by the body to mycophenolic acid, the drug ingredient in Myfortic. Both CellCept and Myfortic are used with other drugs to suppress the immune system.
On November 8, 2007, Roche, the maker of CellCept, submitted an evaluation of its PML cases in patients who have received CellCept in addition to other immunosuppressive medicines. Roche also submitted recommendations to the FDA for including information about PML in the CellCept prescribing information. On March 14, 2008, Roche informed the FDA of the Dear Health Care Professional letter it issued in Europe on February 18, 2008.
Roche is aware of cases of PML in transplant recipients and patients with systemic lupus erythematosus (SLE), an autoimmune disorder that is sometimes treated with CellCept; however, CellCept and Myfortic are not approved for treating SLE or similar autoimmune disorders.
FDA is reviewing data submitted by Roche, including postmarketing reports it has received of PML in patients who took CellCept or Myfortic, and the proposed revisions to the CellCept prescribing information. FDA has asked Novartis, the maker of Myfortic, for data on PML cases and to revise the Myfortic prescribing information to include the same information about PML included in the CellCept prescribing information.
FDA anticipates it may take about 2 months to complete its review of the postmarketing reports and the proposed revised prescribing information for CellCept and Myfortic about PML. As soon as FDA completes the review, FDA will communicate the conclusions and recommendations to the public. Until further information is available, patients and healthcare professionals should be aware of the possibility of PML, such as localized neurologic signs and symptoms in the setting of a suppressed immune system, including during therapy with CellCept and Myfortic. Decreasing total immunosuppression may improve the outcome of patients who develop PML.
This communication is in keeping with FDA’s commitment to inform the public about its ongoing safety reviews of drugs.
>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>
Yes, it's killing people, but more importantly (the cha-ching):
>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>
....More than 500,000 patients worldwide have used CellCept, which brought in more than $2 billion Swiss francs ($1.99 billion U.S. dollars) in 2007, according to the company....
Sales of a multiple sclerosis drug, Biogen Idec Inc’s and Elan Corp Plc’s Tysabri, were suspended in 2005 amid three reports of PML.
The drug returned to the market in 2006 with limits, when the FDA decided patients were willing to accept the risk in light of the drug’s benefits.
The agency said it has also asked Novartis for related data and called on the drugmaker to update its prescribing information on Myfortic’s label. The drugmaker does not provide specific sales figures for Myfortic because it is not one of its top 20 products.
In a statement, Novartis said while it “is not aware of any instances of PML in patients using Myfortic, we will comply with the class label change requested by FDA.”
Shares of Novartis were off 3.9 percent, or $1.90, at $47.27 in afternoon trading on the New York Stock Exchange; earlier they closed down 2.8 percent in Switzerland. Shares of Roche closed down nearly 1 percent on the Swiss exchange. (Reporting by Susan Heavey; editing by Gerald E. McCormick and Dave Zimmerman)
I can only say the drug reps must be doing a helluva a job schmoozing up the doctors and convincing them to prescribe this expensive, unproven drug to every lupus patient (and there are millions of us, so what a racket!) Someone’s getting a new Beemer and a vacation in Rio. And someone else is getting an early grave (PML).
>>>>
FDA issues a Communication About an Ongoing Safety Review of CellCept and Myfortic
ROCKVILLE, Md., April 10, 2008–FDA is investigating a potential association between the use of CellCept (mycophenolate mofetil) and Myfortic (mycophenolic acid), medicines used to prevent organ rejection, and the development of progressive multifocal leukoencephalopathy (PML), a life-threatening disease.
PML is a rare disorder that affects the central nervous system. When it occurs, it is usually in patients with immune systems suppressed by disease or medicines. It happens when the polyomavirus, also known as the JC virus, is activated. The JC virus is found in most adults but does not usually cause symptoms. Scientists do not know exactly how the JC virus is activated. Once activated, the JC virus attacks the cells that make myelin, the protective coating around nerve cells. Signs and symptoms of PML can include localized neurologic signs and symptoms including vision changes, loss of coordination, clumsiness, memory loss, difficulty speaking or understanding what others say, and weakness in the legs. Many patients who develop PML die. Patients who survive may have permanent disability due to irreversible nerve damage. More information on PML can be found at the National Institutes of Health website.
CellCept is approved to prevent heart, liver, and kidney transplant rejection and Myfortic is approved to prevent kidney transplant rejection. Mycophenolate mofetil, the drug ingredient in CellCept, is metabolized by the body to mycophenolic acid, the drug ingredient in Myfortic. Both CellCept and Myfortic are used with other drugs to suppress the immune system.
On November 8, 2007, Roche, the maker of CellCept, submitted an evaluation of its PML cases in patients who have received CellCept in addition to other immunosuppressive medicines. Roche also submitted recommendations to the FDA for including information about PML in the CellCept prescribing information. On March 14, 2008, Roche informed the FDA of the Dear Health Care Professional letter it issued in Europe on February 18, 2008.
Roche is aware of cases of PML in transplant recipients and patients with systemic lupus erythematosus (SLE), an autoimmune disorder that is sometimes treated with CellCept; however, CellCept and Myfortic are not approved for treating SLE or similar autoimmune disorders.
FDA is reviewing data submitted by Roche, including postmarketing reports it has received of PML in patients who took CellCept or Myfortic, and the proposed revisions to the CellCept prescribing information. FDA has asked Novartis, the maker of Myfortic, for data on PML cases and to revise the Myfortic prescribing information to include the same information about PML included in the CellCept prescribing information.
FDA anticipates it may take about 2 months to complete its review of the postmarketing reports and the proposed revised prescribing information for CellCept and Myfortic about PML. As soon as FDA completes the review, FDA will communicate the conclusions and recommendations to the public. Until further information is available, patients and healthcare professionals should be aware of the possibility of PML, such as localized neurologic signs and symptoms in the setting of a suppressed immune system, including during therapy with CellCept and Myfortic. Decreasing total immunosuppression may improve the outcome of patients who develop PML.
This communication is in keeping with FDA’s commitment to inform the public about its ongoing safety reviews of drugs.
>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>
Yes, it's killing people, but more importantly (the cha-ching):
>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>
....More than 500,000 patients worldwide have used CellCept, which brought in more than $2 billion Swiss francs ($1.99 billion U.S. dollars) in 2007, according to the company....
Sales of a multiple sclerosis drug, Biogen Idec Inc’s and Elan Corp Plc’s Tysabri, were suspended in 2005 amid three reports of PML.
The drug returned to the market in 2006 with limits, when the FDA decided patients were willing to accept the risk in light of the drug’s benefits.
The agency said it has also asked Novartis for related data and called on the drugmaker to update its prescribing information on Myfortic’s label. The drugmaker does not provide specific sales figures for Myfortic because it is not one of its top 20 products.
In a statement, Novartis said while it “is not aware of any instances of PML in patients using Myfortic, we will comply with the class label change requested by FDA.”
Shares of Novartis were off 3.9 percent, or $1.90, at $47.27 in afternoon trading on the New York Stock Exchange; earlier they closed down 2.8 percent in Switzerland. Shares of Roche closed down nearly 1 percent on the Swiss exchange. (Reporting by Susan Heavey; editing by Gerald E. McCormick and Dave Zimmerman)
Friday, December 28, 2007
I'm not sick this Christmas
After sitting around for several hours at my parents' house enjoying
my favorite Christmas present (besides being alive), a Van Halen
Pictorial history book, I began waxing philosophical (Van Halen does
that to me- well, VH with David Lee Roth. Sammy Hagar, not so
much)... I have been reflecting upon the gifts that 2007 brought me.
Which included seeing Van Halen on tour, with Diamond Dave, at
Madison Square Garden. I screamed for 2 hours and smiled for a week.
Also, getting married to my lovemuffin (www.joegmusic.com) and going
to Hawaii on honeymoon (and surfing!). Not necessarily in order of
gratitude, but definitely in increasing order of likelihood (as in
not-a-shot-in-H-E-doubletoothpicks, whodathunkit, and maybe
someday).
It's hard to believe that just over a year ago I had canceled our
wedding due to illness (last October, my 3rd episode of kidney
failure since 1993. I got sprung from the hospital on Halloween-
hospital robe- instant costume!). I'm feeling much better now, partly
because I scaled back my concerts for 2007 and have been more
conscious of preserving my Qi (energy/ life force). For example, I no
longer sleep in the van (partly because I traded it in), and I try to
fly more and drive fewer hours. I also gave up Diet Coke and began
getting acupuncture again (it's been a while). I've felt less
zombie-esque this past month than I have in probably 18 months. So,
who knows, I may even feel human in 08! I just hope it doesn't ruin
my comedy. ;)
listen to funny songs at
http://www.thesingingpatient.com
my favorite Christmas present (besides being alive), a Van Halen
Pictorial history book, I began waxing philosophical (Van Halen does
that to me- well, VH with David Lee Roth. Sammy Hagar, not so
much)... I have been reflecting upon the gifts that 2007 brought me.
Which included seeing Van Halen on tour, with Diamond Dave, at
Madison Square Garden. I screamed for 2 hours and smiled for a week.
Also, getting married to my lovemuffin (www.joegmusic.com) and going
to Hawaii on honeymoon (and surfing!). Not necessarily in order of
gratitude, but definitely in increasing order of likelihood (as in
not-a-shot-in-H-E-doubletoothpicks, whodathunkit, and maybe
someday).
It's hard to believe that just over a year ago I had canceled our
wedding due to illness (last October, my 3rd episode of kidney
failure since 1993. I got sprung from the hospital on Halloween-
hospital robe- instant costume!). I'm feeling much better now, partly
because I scaled back my concerts for 2007 and have been more
conscious of preserving my Qi (energy/ life force). For example, I no
longer sleep in the van (partly because I traded it in), and I try to
fly more and drive fewer hours. I also gave up Diet Coke and began
getting acupuncture again (it's been a while). I've felt less
zombie-esque this past month than I have in probably 18 months. So,
who knows, I may even feel human in 08! I just hope it doesn't ruin
my comedy. ;)
listen to funny songs at
http://www.thesingingpatient.com
Saturday, November 17, 2007
Why Do I Have Lupus?
That's the question that haunts us when we're diagnosed with lupus. (After of course, "what the heck is lupus?")
For me, it was very important to differentiate between taking the *blame* for getting sick and taking the *responsibility* for my illness. Taking the blame means I did this to myself, shame on me, it's my fault, and I deserve whatever comes to me. Taking responsibility is more along the lines of "well, for whatever reason, I have this disease. I will learn as much as I can about the illness and the various options available to me in terms of treatment, both mainstream and alternative, as well as self-care. And then I will act on that knowledge."
I did not choose to have lupus (I'd never even heard of it), but I do get to choose how I react to it. And that takes me from being a victim to being a participant in my state of wellbeing.
Western medicine (which means, the US and mostly Europe, as opposed Eastern Medicine, which would be Asia) blames all illnesses on genetics and viruses. For the most part, they do not consider other factors, such as diet and mental state, toxins or previous medical treatments as contributing to a state of dis-ease, or illness. I do believe that some people have such great genetics that you could roll them in toxic waste while they guzzle gin and chain smoke guitars and they’d never fall ill. And some of us are far more vulnerable. Butt illness does not pop up out of nowhere for no reason.
Don't get me wrong- Western medicine is exactly who I'd go to with a broken bone, a bullet wound, or any other emergency/ trauma. And in fact, I use them all the time, despite the fact that I'd rather not. But for chronic illnesses, especially autoimmune diseases like lupus, MS, chronic fatigue, scleroderma (etc.), managing the diseases with just medication can lead to even more serious problems down the road, caused by the drugs.
On the other extreme, refusing drug treatment when lupus (or another disease) is wildly out of control and is attacking vital organs is not wise either.
So the ideal scenario for someone like me, with severe lupus, which involves major organs, is this: a miraculous overnight spontaneous and permanent remission. While I’m waiting for that to happen, my plan is this: Go on the drugs and get the disease under control. Once the symptoms are under control, and I have the energy to do so, start dealing with the underlying causes.
Things that contribute to poor health:
- poor diet (including processed foods, transfats and artificial sweeteners, esp. aspartame, aka nutrasweet, not enough fruits and veggies, too much sugar/ salt)
- dental fillings containing mercury
- other dental problems
- food allergies
- alcohol/ drug abuse
- environmental toxins, including but not limited to heavy metals, polluted water and air, pesticides, household cleaners
- stress
- personal relationships
-"unfinished business" (emotional baggage)
- overgrowth of yeast (candida) (which can be caused by taking antibiotics or steroids or the Pill)
- poor mental health
- poor attitude
- viruses
- bacteria
- parasites
- poor digestion/ low stomach acid
- undetected gallstones
- and the very medications prescribed to us:
- vaccinations (those who have been vaccinated have a higher incidence of cancer, autism, and arthritis than those who have not been vaccinated)
- antibiotics
- steroids
- over-the-counter medications, esp. NSAIDs (non-steroidal anti-inflammatory drugs such as Advil, Aleve, etc.)
(sources: http://curezone.com/dis/1.asp?C0=216, and Alternative Medicine, book )
For the most part, our medical system is illness-oriented instead of wellness-oriented. Even "wellness days" are often just screening for people they can sell Blood pressure or cholesterol drugs to. It's all about drugs and surgery. Everything is blamed on genetics and viruses (or bacteria) and then drugs are thrown at it. We are treated as though we have little to no control over the state of our health and these things just "jump out at us" for no reason. Patients are not generally challenged to change their lifestyles.
Either our doctors don't believe our lifestyles have much, if anything, to do with our health; Or, if they do, they think most of us would rather pop pills and just go on as usual, rather than make difficult changes. Sadly, that is often the case. While I realize that in some parts of the country, it's nearly impossible to make healthy changes (in South Los Angeles, it is reported that it is easier to obtain a handgun than it is to get a piece of fruit), for those of us who have the means to get healthy food and supplements, we have to overcome our old bad habits if we're going to get as well as we can.
When I look at the list of causes above, I think of the many, many teeth I've had pulled, the braces, the wisdom tooth extraction, the current cavities I have that need to be addressed, the operation on my eyes when I was 3 or 4, the vaccinations, the full-body rash I've had at least twice from taking antibiotics, the junk I was eating before I got sick, because I was on minimum wage, my personal situation when I got sick: disliked my job and bought a place in a neighborhood where I was broken into less than 2 weeks after moving in, the stress of trying to live on minimum wage, and being totally addicted to Diet soda and Advil. As for poor digestion, this one is chicken- egg (which came first?): I read that 100% of lupus patients have food allergies! Do food allergies contribute to lupus or does the treatment for lupus (steroids) result in developing food allergies? And regarding yeast (candida), if you don't have it to begin with, you will develop it from taking prednisone. I did.
Now some people get really mad when they hear of people suggesting a “cure” for something like lupus. They may feel that folks are trying to scam sick people, which does often happen. Or, they may not want to admit that maybe they can do something to positively affect their own health. I can’t read their minds. I also can’t control how other people feel. So, that being said, I present to you this list of:
“cures” (things that will help restore your health):
1) Eat good food.
A low-fat vegan diet is suggested for folks with lupus. Vegan means no meat or animal products, including butter, cheese, milk, ice cream) If you decide to go vegan or vegetarian, do some reading to make sure you get enough protein. It’s not enough o just eliminate certain foods; your diet needs to be balanced.
The Candida Diet is challenging but when I did it for a year and a half (2002-2003), during my second big lupus flare), I felt really good. I looked pretty good too, looking at pictures from then. My hair and skin were nice, and I kept my weight at its ideal. Eliminating sugar? Impossible! No, there are lots of great choices of other things to eat, and even natural sugar substitutes like stevia and xylitol.
Food Allergy Elimination Diet. I got a blood test for food allergies, this is where they draw blood and look for delayed allergic reactions, the kind you wouldn’t notice because they occur 24-72 hours after you eat something.
Juicing is a nice way to get lots of nutrients easily assimilated. Be sure to use organic fruits and veggies and wash them.
2) take digestive enzymes, a high quality multi-vitamin, and high-quality (mercury-free) fish oil (or fish/ flax oil mix) daily.
3) get a dental checkup with a holistic or “mercury free” dentist.
If you have mercury fillings (any metal, or “silver” filling is at least 50% mercury, a known and serious toxin), get them replaced with porcelain or composite. If your dentist gives you a bunch of grief over this, go elsewhere. These metal fillings are supposed to be replaced every 15-20 years anyway.
4) eliminate environmental toxins. If you live next door to a power plant, move. Other than that, use natural products to clean your home. There are all kind of great recipes for cleaning solutions involving lemon juice, vinegar, etc. You can also put a whole-house air filter, a (much cheaper) one-room portable air purifier (I used this when I developed post-prednisone hay fever- very helpful), a whole-house water purifier, or separate water purifiers for your kitchen sink, your shower, your sport water bottle, etc. There is a difference between a water filter and a water purifier. Purifiers remove bacteria, cysts, chemicals, and viruses (which filters do not remove), as well as lead and chlorine.
5) counseling/ journaling/ support group. It’s important to have a place where you can honestly share your sometimes overwhelming feelings about having a chronic illness. Family usually have enough to deal with, thinking about caring for you, or whether they gave you faulty genetics, or whatever- they’re usually to close to the situation to be of much solace. Sometimes the official support groups are not good at dealing with emotional stuff either. So I started my own group where we could all blow off some steam. And I went to a counselor for about 6 weeks and just blew off steam every week.
Even cheaper, and write out your feelings every day for 15 minutes. Then hide it somewhere where no one will stumble on it.
6) exercise. Even if it means slowly getting into the pool, hanging onto the side and just bouncing for 5 minutes, start somewhere, and set little goals to do just a little more each time.
7) laughter/ good company. It’s so important to have something in your life that brings you joy, and makes you want to get out of bed. Mad libs, funny movies, comic books, and good friends who aren’t frightened off by your illness and can laugh with you. Many studies have been done abot the positive impact laughter has on health and well-being, releasing endorphins, improving mental outlook, and even providing exercise!
8) drink clean water and plenty of it.
9) get a heavy metal test: you can get a tiny sample of hair tested for the presence of lead, arsenic, nickel, copper, etc. If you do have these, or aterial plaque, then you may want to get chelation therapy. I did, and I felt great during that time.
10) learn some self-care: meditation, qi gong, yoga, tai chi
11) acupuncture. I love it.
Where I’m at right now:
One year ago, I had my third lupus flare (induced, in part, by the stress of moving and wedding planning). I was in the hospital for 8 days. My kidneys were failing for the third time (down to about 30%). I was put on a bunch of drugs, including 40 mg of prednisone and 2000 mg of cellcept, as well as attivan, paxil, nefedical, and percaset. A year later, I’m still taking all of them, except I’m on 1000 mg of cellcept and 2.5 mg of prednisone.
So, while I am able to eat again and my kidney function is back to normal and I am mostly pain free and these are all wonderful things, I am still tired and wear out quickly. I don’t feel sick, as long as I don’t do too much, but I don’t feel well and I have to sleep 10-12 hours a night.
Why?
I did not return quickly to my healthy endeavors, as I had done during my first 2 flare (1994, 2002) because I still had a house to unpack, a career to maintain, a dog to help take care of, and a wedding to reschedule. And I was so tired. So I just plowed through the last year, largely on sheer willpower and drugs, still feeling pretty tired. Finally, the wedding is past, the house is mostly settled into, the dog is easy to care for, and I’m slowing down my performance schedule so I can take care of myself and get back to feeling good again. I know it’s possible to feel good again, because I’ve done it.
What’s the Plan?
1 month ago I quit drinking diet coke. That was hard. I craved it. I made some tea with stevia. I’ve mostly been drinking that and some water. I then purchased a sport bottle water purifier, which I keep with me all the time, and have been drinking lots of clean water. And a couple weeks ago, I started back with acupuncture. A week ago, I added back in good-quality daily mutli-vitamins. Yesterday, I started back on digestive enzymes. Eventually, I’ll do the candida diet again, as I’m sure I’m crawling with yeast again, now that I’ve been on prednisone for a year and have had antibiotics at least twice in the last year. Meanwhile I have to get some dental work done. (again…).
I’m sick and tired of being sick and tired. I want to feel great again, and I believe I can. I know I can, because I’ve done it before. I’m living proof to myself. Will I make the effort and follow through? Tune in next time for another edition of…
The Singing Patient
www.thesingingpatient.com
For me, it was very important to differentiate between taking the *blame* for getting sick and taking the *responsibility* for my illness. Taking the blame means I did this to myself, shame on me, it's my fault, and I deserve whatever comes to me. Taking responsibility is more along the lines of "well, for whatever reason, I have this disease. I will learn as much as I can about the illness and the various options available to me in terms of treatment, both mainstream and alternative, as well as self-care. And then I will act on that knowledge."
I did not choose to have lupus (I'd never even heard of it), but I do get to choose how I react to it. And that takes me from being a victim to being a participant in my state of wellbeing.
Western medicine (which means, the US and mostly Europe, as opposed Eastern Medicine, which would be Asia) blames all illnesses on genetics and viruses. For the most part, they do not consider other factors, such as diet and mental state, toxins or previous medical treatments as contributing to a state of dis-ease, or illness. I do believe that some people have such great genetics that you could roll them in toxic waste while they guzzle gin and chain smoke guitars and they’d never fall ill. And some of us are far more vulnerable. Butt illness does not pop up out of nowhere for no reason.
Don't get me wrong- Western medicine is exactly who I'd go to with a broken bone, a bullet wound, or any other emergency/ trauma. And in fact, I use them all the time, despite the fact that I'd rather not. But for chronic illnesses, especially autoimmune diseases like lupus, MS, chronic fatigue, scleroderma (etc.), managing the diseases with just medication can lead to even more serious problems down the road, caused by the drugs.
On the other extreme, refusing drug treatment when lupus (or another disease) is wildly out of control and is attacking vital organs is not wise either.
So the ideal scenario for someone like me, with severe lupus, which involves major organs, is this: a miraculous overnight spontaneous and permanent remission. While I’m waiting for that to happen, my plan is this: Go on the drugs and get the disease under control. Once the symptoms are under control, and I have the energy to do so, start dealing with the underlying causes.
Things that contribute to poor health:
- poor diet (including processed foods, transfats and artificial sweeteners, esp. aspartame, aka nutrasweet, not enough fruits and veggies, too much sugar/ salt)
- dental fillings containing mercury
- other dental problems
- food allergies
- alcohol/ drug abuse
- environmental toxins, including but not limited to heavy metals, polluted water and air, pesticides, household cleaners
- stress
- personal relationships
-"unfinished business" (emotional baggage)
- overgrowth of yeast (candida) (which can be caused by taking antibiotics or steroids or the Pill)
- poor mental health
- poor attitude
- viruses
- bacteria
- parasites
- poor digestion/ low stomach acid
- undetected gallstones
- and the very medications prescribed to us:
- vaccinations (those who have been vaccinated have a higher incidence of cancer, autism, and arthritis than those who have not been vaccinated)
- antibiotics
- steroids
- over-the-counter medications, esp. NSAIDs (non-steroidal anti-inflammatory drugs such as Advil, Aleve, etc.)
(sources: http://curezone.com/dis/1.asp?C0=216, and Alternative Medicine, book )
For the most part, our medical system is illness-oriented instead of wellness-oriented. Even "wellness days" are often just screening for people they can sell Blood pressure or cholesterol drugs to. It's all about drugs and surgery. Everything is blamed on genetics and viruses (or bacteria) and then drugs are thrown at it. We are treated as though we have little to no control over the state of our health and these things just "jump out at us" for no reason. Patients are not generally challenged to change their lifestyles.
Either our doctors don't believe our lifestyles have much, if anything, to do with our health; Or, if they do, they think most of us would rather pop pills and just go on as usual, rather than make difficult changes. Sadly, that is often the case. While I realize that in some parts of the country, it's nearly impossible to make healthy changes (in South Los Angeles, it is reported that it is easier to obtain a handgun than it is to get a piece of fruit), for those of us who have the means to get healthy food and supplements, we have to overcome our old bad habits if we're going to get as well as we can.
When I look at the list of causes above, I think of the many, many teeth I've had pulled, the braces, the wisdom tooth extraction, the current cavities I have that need to be addressed, the operation on my eyes when I was 3 or 4, the vaccinations, the full-body rash I've had at least twice from taking antibiotics, the junk I was eating before I got sick, because I was on minimum wage, my personal situation when I got sick: disliked my job and bought a place in a neighborhood where I was broken into less than 2 weeks after moving in, the stress of trying to live on minimum wage, and being totally addicted to Diet soda and Advil. As for poor digestion, this one is chicken- egg (which came first?): I read that 100% of lupus patients have food allergies! Do food allergies contribute to lupus or does the treatment for lupus (steroids) result in developing food allergies? And regarding yeast (candida), if you don't have it to begin with, you will develop it from taking prednisone. I did.
Now some people get really mad when they hear of people suggesting a “cure” for something like lupus. They may feel that folks are trying to scam sick people, which does often happen. Or, they may not want to admit that maybe they can do something to positively affect their own health. I can’t read their minds. I also can’t control how other people feel. So, that being said, I present to you this list of:
“cures” (things that will help restore your health):
1) Eat good food.
A low-fat vegan diet is suggested for folks with lupus. Vegan means no meat or animal products, including butter, cheese, milk, ice cream) If you decide to go vegan or vegetarian, do some reading to make sure you get enough protein. It’s not enough o just eliminate certain foods; your diet needs to be balanced.
The Candida Diet is challenging but when I did it for a year and a half (2002-2003), during my second big lupus flare), I felt really good. I looked pretty good too, looking at pictures from then. My hair and skin were nice, and I kept my weight at its ideal. Eliminating sugar? Impossible! No, there are lots of great choices of other things to eat, and even natural sugar substitutes like stevia and xylitol.
Food Allergy Elimination Diet. I got a blood test for food allergies, this is where they draw blood and look for delayed allergic reactions, the kind you wouldn’t notice because they occur 24-72 hours after you eat something.
Juicing is a nice way to get lots of nutrients easily assimilated. Be sure to use organic fruits and veggies and wash them.
2) take digestive enzymes, a high quality multi-vitamin, and high-quality (mercury-free) fish oil (or fish/ flax oil mix) daily.
3) get a dental checkup with a holistic or “mercury free” dentist.
If you have mercury fillings (any metal, or “silver” filling is at least 50% mercury, a known and serious toxin), get them replaced with porcelain or composite. If your dentist gives you a bunch of grief over this, go elsewhere. These metal fillings are supposed to be replaced every 15-20 years anyway.
4) eliminate environmental toxins. If you live next door to a power plant, move. Other than that, use natural products to clean your home. There are all kind of great recipes for cleaning solutions involving lemon juice, vinegar, etc. You can also put a whole-house air filter, a (much cheaper) one-room portable air purifier (I used this when I developed post-prednisone hay fever- very helpful), a whole-house water purifier, or separate water purifiers for your kitchen sink, your shower, your sport water bottle, etc. There is a difference between a water filter and a water purifier. Purifiers remove bacteria, cysts, chemicals, and viruses (which filters do not remove), as well as lead and chlorine.
5) counseling/ journaling/ support group. It’s important to have a place where you can honestly share your sometimes overwhelming feelings about having a chronic illness. Family usually have enough to deal with, thinking about caring for you, or whether they gave you faulty genetics, or whatever- they’re usually to close to the situation to be of much solace. Sometimes the official support groups are not good at dealing with emotional stuff either. So I started my own group where we could all blow off some steam. And I went to a counselor for about 6 weeks and just blew off steam every week.
Even cheaper, and write out your feelings every day for 15 minutes. Then hide it somewhere where no one will stumble on it.
6) exercise. Even if it means slowly getting into the pool, hanging onto the side and just bouncing for 5 minutes, start somewhere, and set little goals to do just a little more each time.
7) laughter/ good company. It’s so important to have something in your life that brings you joy, and makes you want to get out of bed. Mad libs, funny movies, comic books, and good friends who aren’t frightened off by your illness and can laugh with you. Many studies have been done abot the positive impact laughter has on health and well-being, releasing endorphins, improving mental outlook, and even providing exercise!
8) drink clean water and plenty of it.
9) get a heavy metal test: you can get a tiny sample of hair tested for the presence of lead, arsenic, nickel, copper, etc. If you do have these, or aterial plaque, then you may want to get chelation therapy. I did, and I felt great during that time.
10) learn some self-care: meditation, qi gong, yoga, tai chi
11) acupuncture. I love it.
Where I’m at right now:
One year ago, I had my third lupus flare (induced, in part, by the stress of moving and wedding planning). I was in the hospital for 8 days. My kidneys were failing for the third time (down to about 30%). I was put on a bunch of drugs, including 40 mg of prednisone and 2000 mg of cellcept, as well as attivan, paxil, nefedical, and percaset. A year later, I’m still taking all of them, except I’m on 1000 mg of cellcept and 2.5 mg of prednisone.
So, while I am able to eat again and my kidney function is back to normal and I am mostly pain free and these are all wonderful things, I am still tired and wear out quickly. I don’t feel sick, as long as I don’t do too much, but I don’t feel well and I have to sleep 10-12 hours a night.
Why?
I did not return quickly to my healthy endeavors, as I had done during my first 2 flare (1994, 2002) because I still had a house to unpack, a career to maintain, a dog to help take care of, and a wedding to reschedule. And I was so tired. So I just plowed through the last year, largely on sheer willpower and drugs, still feeling pretty tired. Finally, the wedding is past, the house is mostly settled into, the dog is easy to care for, and I’m slowing down my performance schedule so I can take care of myself and get back to feeling good again. I know it’s possible to feel good again, because I’ve done it.
What’s the Plan?
1 month ago I quit drinking diet coke. That was hard. I craved it. I made some tea with stevia. I’ve mostly been drinking that and some water. I then purchased a sport bottle water purifier, which I keep with me all the time, and have been drinking lots of clean water. And a couple weeks ago, I started back with acupuncture. A week ago, I added back in good-quality daily mutli-vitamins. Yesterday, I started back on digestive enzymes. Eventually, I’ll do the candida diet again, as I’m sure I’m crawling with yeast again, now that I’ve been on prednisone for a year and have had antibiotics at least twice in the last year. Meanwhile I have to get some dental work done. (again…).
I’m sick and tired of being sick and tired. I want to feel great again, and I believe I can. I know I can, because I’ve done it before. I’m living proof to myself. Will I make the effort and follow through? Tune in next time for another edition of…
The Singing Patient
www.thesingingpatient.com
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